#AIDS2016: My brave boy, Nkosi
by Nosipho Mngoma
Access Equity Rights Now; A call to action to reach people who lack access to HIV services.
This is the theme of the 21st International Aids Conference which is in South Africa for the second time.
With the government having recently announced that access to antiretroviral (ARV) treatment would no longer be based on a CD4 count, South Africa is bound to remain the country with the largest ARV treatment programme in the world.
This is a far cry from when the conference was previously held in Durban, where the world got to meet the then longest living person born with HIV in the country, Nkosi Johnson.
Speaking at a conference aptly themed Breaking the Silence, Johnson had full-blown Aids at the time and help for him came too late.
His adoptive mother, Gail, recalls she had previously not been able to afford the R2 400 to get Nkosi on to medication privately. “It was sponsored by an American woman who had been touched by Nkosi’s Aids conference speech. His CD4 count at the time was 2. His frail body did not respond to the medication, it made very little difference.”
As his body wasted away, she would have to punch a new hole into his belt because he was getting thinner by the day.
Nkosi was no longer going to school, but would ask to go just to visit his friends and teachers.
Some months after the conference, he flew to the US to give a speech despite getting weaker. “He hated having diarrhoea most, we all did, but there was nothing we could do.”
Upon his return he went to Cape Town to visit Gail’s friend and when he came back, he had fallen asleep on the luggage trolley. “I took one look at him…”
At this time, Gail said Nkosi had taken himself off treatment. First telling her daughter Nicky. “I would say won’t you try just one (pill).” He said ‘no’. There was one medication in liquid form and he hated the taste of, he still had diarrhoea and was weak and he just said ‘mommy I don’t want it (medication) any more’, I said you know what is going to happen. We discussed death and he would say ‘I want to go to my mommy (birth mother), but I will miss you mommy (Gail)'. He was tired.”
To this she would say; “I won’t be able to see you but you will sit on my shoulder every day and tell me where I’m going wrong. One day the 12-year-old didn’t want to die and the next day he did, it was an emotional roller-coaster.”
But Gail knew her little boy was dying. “He was so tired but wanted to be with other children at Nkosi’s Haven. He would ask to sleep there often because he knew he would get spoiled and treated like a little king and be around other kids with HIV.”
She said she brought Nkosi up never to be ashamed, embarrassed or shy about his status. “When he first moved in with us at 3, I would say, you’ve got baddies in your blood and they are fighting goodies. As he got older, I used the correct terms. I had to teach him to be responsible. If he got invited to a kiddies’ party, I would tell him if he got cut he should go to the mommy and ask for a plaster because the baddies in his blood were not good for other people.”
The Christmas after his Aids conference speech, Gail said “his little mind was going in a way. He was mixing up words, but we all sat and ate together with the other moms and kids, they had nowhere to go for Christmas”.
Nkosi was hospitalised and fell into a coma. He came back home and on June 1, and at about 5am, his night nurse woke Gail up saying Nkosi was going. “He passed away less than an hour later. His lips and eyes were still open and I said to him: ‘Go now, go and be with mommy’. ”
The image of his emaciated face on his death bed is not how Gail remembers Nkosi.
“I remember him more when he was up and about, particularly when he opened Nkosi’s Haven. He was so proud of it.”
She believes Nkosi would be “over the moon” at the strides made in ARV roll-out in South Africa, particularly the successful prevention of mother to child transmission campaign. “He never wanted another child infected.”
“South Africa can give itself a pat on the back for that.”
However, Gial is still extremely concerned about new infections, especially among young people.
“I don’t know where we are going wrong. The number of new infections per day among our young girls, why, why? Most of these kids would have seen parents, sibling neighbours die from Aids-related disease. I would have thought that would make people stop and think, take responsibility. I don’t know whether it’s a need for more education and awareness because they think there is medication but who wants to take medication for the rest of their lives? ”
Gail believes Nkosi’s legacy is that of making a difference in the acceptance of HIV positive children as well as teachers in schools.
About her own legacy, Gail says; “I didn’t see myself as an activist. I saw things that needed to be done and I did them. There are going to be a whole lot of positives. I know I am appreciated, I know I made a difference, especially around awareness and acceptance. As a family we normalised HIV. But I know there are others, I think, who would like to wipe me off the face of the earth. Who think I’m exploiting black people that I exploited Nkosi…that hurts, but I stop and think what the hell are they doing? I’m not going to be remembered as Mother Teresa, but as a person who did things when they needed to be done, just like my brave boy.”